Oregon woman lives with intense facial pain

EUGENE, Ore. (AP) - For more than half of her 34 years, Jenny LeCompte has lived with excruciating pain on the left side of her face. A whiff of breeze on the skin feels like the cuts of a thousand knives. All the teeth on the left side hurt, and she says her tongue feels "like I'm licking an electrical outlet." As often as 20 times a day, she experiences stabbing pain "like an ice pick" in her temple. "If it happens only five times, it is a really good day," LeCompte says dryly.

The ancient name for what she's got, "tic douloureux," comes from the French. In English, it's trigeminal neuralgia. Some people call it the "suicide disease." The American Association of Neurological Surgeons describes it as "the most excruciating pain known to humanity."

LeCompte has undergone three surgeries to try to fix it. She was let go from a 12-year career working for Lane County because of it. She recently was granted long-term disability payments, which amount to a little more than half of her previous wages, but with the loss of her job she no longer has health insurance.

She applied for disability through Social Security but, as often happens, was denied the first time around. She plans to appeal.

At this point, "The only chance of me not being in pain is to die," LeCompte says. "I don't foresee a day in my life when I'm not in pain."

Her many friends have come together to try to help her. They will hold a "Pennies for Jenny" event on Jan. 27, including a silent auction, bake sale, luncheon, henna art booth and raffles, to raise money to help keep her and her 9-year-old son, Connor, afloat.

"I have to say, she's the strongest person I know, especially given what she's had to live with," says Priscilla McNary, who describes her 14-year relationship with LeCompte as best friends. "She's always worked. She's gone to school and has a bachelor's degree and a master's degree and a degree in culinary arts. She is a wonderful person."

LeCompte's problems with the cranial nerves in her face began when she was 15 years old and a student at Pleasant Hill High School.

"At that time, I had a case of Bell's Palsy, which affects the seventh cranial nerve," she says. "I found out later it was a severe case - it typically resolves itself in three days to three months, but I had it for a year. I couldn't blink my left eye or smile with the left side of my mouth. To this day, I can't move my left eyebrow."

That was just the beginning. While still dealing with that, LeCompte began to feel twitches on the left side of her face, which turned into a "drop-to-your-knees kind of pain," she recalls. "I also heard sounds about 10 times louder than normal, so I had to see an audiologist for that. I can't even name how many doctors I saw and how many tests I had, trying to figure out what was going on. Some of the doctors even said I was just an 'attention-seeker.'"

The turning point came six years ago when she was reading Dr. Paul Donohue's "To Your Good Health" column in The Register-Guard.

"A man wrote in describing a condition his daughter had, and it was exactly the way I felt - like lightning striking the face, like being stabbed with an ice pick and the pain branching out through the face - and Dr. Donohue identified it," LeCompte says. "I was picking up the phone to call my mom to tell her about it and just then the phone rang, and she said, 'You have to read Dr. Donohue.'"

LeCompte tore the column out of the paper and went to her doctor's office. "I showed it to his nurse, and she gasped and said, 'You don't want that.' I said, 'I don't want it, but I think I have it.'"

The same day she had the MRI, "The doctor's office called and told me to come in, and they said I have trigeminal neuralgia," LeCompte says. "It was amazing news to me - it was a weight lifted - because it proved I was not crazy, and I finally knew what it was."

The human head has 12 pairs of cranial nerves, which connect the brain with different senses, muscles, glands and organs throughout the body.

No. 5, the trigeminal nerve pair, relays "somatosensory" information such as pressure and pain from the face and head and also from muscles used in chewing; each half of the pair works on one side of the head, and each has three branches: one to the forehead, upper eyelid and eye; another from the lower eyelid down to the nose, cheek and upper portion of the mouth; and the third to the lower lip and jaw.

What goes wrong with the trigeminal nerve to cause terrific pain is not well understood, but the National Institute of Neurological Disorders and Strokes estimates that 150,000 people are diagnosed with the disorder every year.

There may be a genetic component in the formation of blood vessels, and high blood pressure and multiple sclerosis - especially in people who develop it at an early age - appear to be risk factors.

The pain results from an irritation of the nerve, sometimes caused by a blood vessel pressing on the nerve at the point where it enters the base of the brain.

During LeCompte's first surgery for microvascular decompression, doctors discovered an artery wrapped around the trigeminal nerve but in such a tricky fashion that it couldn't be unwound, so they inserted a "cushion" around the nerve to protect it from the blood vessel.

"It worked for four months, and I was ecstatic," LeCompte says. "My whole life was changed - I had so much energy - I felt like a normal person."

McNary remembers it well. "I went to her house, and she looked fantastic," she says. "Nothing, not even a breeze, hurt her face."

Then one day at work in October 2008, LeCompte walked outside for a break, "and the wind hit my face and I fell to my knees in pain, just like before."

At that point, her original physicians referred her to Oregon Health & Science University in Portland. In July 2010, surgeons there inserted a stimulator under LeCompte's skin with electrical leads fanning out to signal the brain to squelch pain signals from the nerves.

"The result wasn't as good as the first surgery, when I was completely pain-free until it failed, but it worked a good percentage of the time," she says. But two years later, last June, the nerve became desensitized to the stimulator, and the pain crashed into her life again.

Two months later, LeCompte underwent surgery again, this time a new procedure to "unbundle" the three branches of the trigeminal nerve and split them lengthwise in an effort to interrupt the pain signals from the nerve to the brain. In her case, the surgery was not very successful, affecting her ability to speak - "Some days it hurts too much to talk and words don't come out right," she says - and leaving her with episodes of vertigo.

"The doctor who did the last two surgeries says there's nothing more that he can do," LeCompte says, breaking into tears. "All the neurologist can recommend is going back through and trying all the medications I've already tried, which either didn't work or made me so sedated I couldn't function."

At the same time, keeping things together for herself and Connor is largely what keeps her going.

"All of this is part of what makes me who I am," LeCompte says. "Much of my life has been spent finding a way to work through all this and not let the pain take over."